Monday, January 8, 2018

Proposed Canadian assisted dying regulations overlook many important details

On December 16 – a year and a half after Canada’s assisted suicide legislation came into effect – Health Canada released its first draft regulations for monitoring the practice. Though they were intended to provide “transparency and [foster] public trust,” the draft of these standards came out of a private “pre-regulatory” process led by Health Canada. We have no way to know the other parties involved, nor whether any of them represented the interests and concerns of people with disabilities…and that is the first of many concerns.

No mention is made of oversight of the euthanasia process, or enforcement of safeguards.

Breaches of the law “are currently, and would remain, under the purview of local law enforcement…” but we don’t know how information about violations would be referred to legal authorities, or what incentives they might be given to investigate and prosecute. We’ve already seen cases in Québec where euthanasia of ineligible people (who were not “at the end of life” or did not have a “grievous and incurable medical condition”) was not pursued.

The regulations do not include a way to verify whether medical practitioners actually file the necessary reports. This will lead to non-reporting of assisted suicide and euthanasia (AS/E), as happens in the BeNeLux countries. Without reports, law enforcement officials will not know who has broken the law.

As well, the regulations make no provision for tracking the outcome when drugs are dispensed for “assisted suicide.” There is nothing to prevent a third party from giving a lethal dose to a person against their will; without a practitioner or other impartial witness, who would know? The states of Washington and Oregon have little “official” documentation of these deaths, but anecdotal evidence (like the story of Thomas Middleton) shows that such fraud and abuse does happen. There is also the possibility that dangerous substances will be left unattended around the house, subject to theft and resale or accidental ingestion by children.

The regulations do not check doctors’ reports of AS/E against all deaths, so as to verify that all “medically-induced” deaths are accounted for. This technique has been the only effective method for alerting researchers to uncounted “medical killing” in other jurisdictions.

Several words and phrases used in the document are either undefined, or create a standard that is not strict enough. These include:

“…an indication of whether…” may apply to an “either/or” choice (for example, whether a doctor had a relationship with the person before receiving the request for AS/E) or a multiple-choice proposition (which eligibility criteria were assessed and whether the practitioner believed that the patient met each criterion).

“…to the best of the practitioner’s knowledge or belief.” This phrase is often used with regard to the practitioner’s responsibility to gather demographic data or determine eligibility for assisted suicide. It is a very low standard.

“…if known…” Similarly, adding this caveat at the end of requirements related to prescribing drugs for assisted suicide relieves the practitioner of any responsibility to follow up on the prescription and learn the outcome.

No safeguards currently exist to prevent a third party from making a request on behalf of a person who has a communication disability, or who is under the influence of the third party. This loophole in the law could have been closed by the regulations.

There is no mechanism to track the participation of assisted suicide advocates in the process of formulating the request and making the eligibility determination. This could cause a variety of problems. First, the potential exists for the advocacy group to persuade the person that AS/E is the best choice, even if the person is ambivalent. Second, the group may be making money for their services through “donations” or “legacies” made by the person. Finally, advocacy organizations’ participation could have an effect on the process: advocates may be asked to act as witnesses to the signing of the application, and practitioners may begin to pass certain tasks (such as communicating information or documenting the process) onto them.

Demographic information collected is insufficient to determine the role of economic factors in a decision to request assisted suicide or euthanasia. (The proposed regulations require authorities to collect information on whether the person lived in an institution or a private residence, the postal code of the residence, their marital status, and their primary occupation while they worked.) The option to declare one’s “place of residence” does not include a choice for long-term hospitalization or for people who are homeless. Household composition and income, home-ownership (or lack thereof), accessibility of the home, personal assistance and/or mental health needs, date of onset of disability, and illness- and disability-related expenses are all economic factors that can affect the person’s decision to request AS/E.

The Minister of Health proposes an online form including multiple choice answers and yes-or-no checkboxes. While these menus may save time in filling out forms, they risk pigeon-holing people and may give an inaccurate picture of those making the request for AS/E. Narrative answers enable practitioners to describe the unique situation of each person.

The regulations seem to allow the reporting obligation to disappear after 90 days if the request does not result in euthanasia. In order to understand the full scope of the AS/E application process, including situations where requests are withdrawn or candidates are deemed ineligible, it is important that all requests be documented, regardless of outcome.

There is no provision for documenting details of euthanasia deaths – for example, time between injections, onset of coma, time between drug administration and death, complications, and what measures are taken to resolve them.

Finally, the regulations do not say how long the data will be kept. In the states of Washington and Oregon, the data on which the annual reports are based are destroyed once the state reports are published. Destroying the data limits the possibility of both in-depth and long-term analysis.

These regulations were designed to streamline the administrative portion of the process for professionals at the expense of compiling necessary information. Leaving gaps in our knowledge and enforcement of the AS/E program will reduce the efficacy of safeguards and put lives at risk.

1 comment:

I have been concerned and silenced throgh so much of the discussion both within the disability community, amongst medical college and at the governmental levels about what happens in the face of complications and when the procedures do not work.